cLL white cell count: My numbers keep slowly... - CLL Support

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cLL white cell count

betsyv profile image
12 Replies

My numbers keep slowly going up - my question is - do they ever go down some? I know this will never go away but maybe it can level off for a bit?

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betsyv profile image
betsyv
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12 Replies
AussieNeil profile image
AussieNeilPartnerAdministrator

Your white cell count includes a range of different white cell types that rise and fall with infections and allergies. You need to monitor your lymphocyte count, which just includes B and T lymphocytes, with the number of B lymphocytes increasing as CLL progresses (CLL cells are faulty/clonal B lymphocytes).

With CLL, our lymphocyte counts can vary considerably from blood test to blood test, particularly when our counts are below 30. That's why CLL specialists don't look at lymphocyte doubling time (one of the criteria watched for an indication of when to start treatment) until the count climbs above 30. Even then, it can climb into the hundreds for some of us and level off, staying fairly flat for years. See: healthunlocked.com/cllsuppo...

While it is important to watch the trend in your lymphocyte count, having it exceed a particular number is not a trigger to start treatment. What's more important is what's happening to your red blood cell/haemoglobin and platelet counts. If your haemoglobin falls below 10 or your platelet count falls below 100, then specialists would look at starting treatment.

Neil

YelvertonDevon profile image
YelvertonDevon in reply toAussieNeil

Thank you Neil. You have succinctly explained my blood test result received today at GPS.

lankisterguy profile image
lankisterguyVolunteer in reply toAussieNeil

AussieNeil's reply is right on target!

If keeping track of all your blood results gets complicated here is a way to record them over time and have nice charts to watch the trends:

healthunlocked.com/cllsuppo...

Len

dkay profile image
dkay

The amount and rate of changes in lymphocyte count varies from person to person. When I was diagnosed, my count was just barely above normal. The count rose steadily for a few years and then proceeded to drop for the next few years. They are now back to just barely above normal and my CLL doctors at NIH have said that I don't need to come back to see them for two years. So, it IS possible for counts to go back down. Maybe my retirement, increased physical activity, and weight loss helped, but then I went back to work, did less physical activity, and gained half the weight back, and the counts still stayed down, so I really can't explain my indolent clinical course. I do wish everyone could receive this kind of path. I don't take it for granted.

Newdawn profile image
NewdawnAdministrator in reply todkay

That’s great to hear dkay and somewhat unusual I suspect but whatever accounts for it, long may it continue.

My ALC and WBC has steadily and resolutely risen on an upward trajectory I’m afraid and rarely stayed the same or dropped. At the moment I’d really like a period of stability but I suspect it won’t happen!

Newdawn

betsyv profile image
betsyv in reply todkay

Good to hear an answer like this and hope it continues for a very long time. Thanks for the reply it give a little hope.

ladyprescott profile image
ladyprescott

I would love to have one blood draw come back with my ALC lower. That has never happened. Right now being monitored each two months and in February I believe I'll have an answer as to when to begin treatment. My ALC started out low in 2012, increased slowly, then from June, 2017 to currently it has gone up very high, very quickly. My Hgb is just below low normal as of last blood draw and I will see in Feb. what it is now. Platelets are now being impacted too.

Jbuckner-75 profile image
Jbuckner-75 in reply toladyprescott

What should your ALC and hemoglobin be?

ladyprescott profile image
ladyprescott in reply toJbuckner-75

It's been so long since it's been normal that I don't recall. Maybe Aussie Neil will come in on this.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toladyprescott

Here is a good reference for blood ranges, but understand they vary from from country to country.

Note too test have a margin of error.

It is general guide

emedicine.medscape.com/arti...

ladyprescott profile image
ladyprescott in reply toCllcanada

Thank you, Chris for coming to the rescue. The last blood draw I had did not show normal values, so I was at a loss to answer j-buckner's question.

joed1rt profile image
joed1rt

I was diagnosed with a WBC of 40 (5 years ago). It steadily increased to a high of around 60 and then suddenly dropped back to 42. I felt like you that it would never go down and was pleasantly surprised. I think this is completely normal.

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